"Chocolate Cysts" & Endomitriosis Diagnosis

[soulfulsarah]

Hi all,

I'm turning to the MumsNet family again as this has all come as a shock. I aoologise in advance if this is a long post.

Before lockdown I had lower abdominal pains and quickly got sent for scans. The scans picked up that I had a large cyst on my left ovary and a smaller one on my right ovary. I kept being told that this is so common for women so its nothing to worry about. They monitored me and then lockdown hit us. I had a letter through the post stating that a Laparoscopic investigation was required and cyst removal was advised once lockdown started to ease. They informed me it would be a quick easy day surgery as it was a common straight forward drainage and removal.

I am now 3 days post surgery and I'm quite overwhelmed with everything that has happened. The surgery wasn't as straight forward as they originally thought. My cysts were in fact ovarian endometriomas, blood filled cysts. Also known as "chocolate cysts" and is linked to Endomitriosis. I was told that this means that I have stage 4 endomitriosis and my left fallopian tube is blocked so I only really have my right ovary keeping me fertile. They also found that my uterous appeared very "sticky" and said 3 of my organs were fused together (bowels and urinary tract which should be free flowing organs). Is there a medical term for this at all?

My overwhelm is, I don't know what this really means for my health going forward. I haven't had the common or typical symptoms of endomitriosis and haven't had any issues with my bowel movements or peeing. My periods have been regular, last about 3 days and although I do get period cramps, they are bareable. So I don't understand whats happened and why this has happened. They didnt really speak too much about my fused organs and focused on my endomitriosis diagnosis. I've been told that I am not infertile, but I may struggle to concieve. That I need to start trying for a baby after 6 weeks of recovery because I'm 34 now, and it could take a year before the NHS allow me onto the waiting list for IVF treatment. Me and the other half aren't in a position to try for a little one yet. In the middle of searching our first home together he was made redundant and we live apart.

Has anybody at all had this kind of experience or has been told they have chocolate cysts? What has the outcome been? It's all new information to me now so I'm trying to learn about the condition and what it means for me going forward. Sorry for all the questions and long post. Just trying to process this, recover from the op and move forward with better knowledge.

Thank you in advance 💛🎗️

So sorry to read that these are actually endometriomas aka chocolate cysts. I also almost fell off my chair in shock when I was diagnosed with endometriosis (many years after starting menses at 14) so I can relate. Whilst I do not have chocolate cysts (my ovaries are polycystic) my uterine cavity was covered in endometriosis deposits and was extensive. I also had rectal pain (known on MN as javelin arse!) as a result of endo too.

BTW have you ever had any prior abdominal surgery e.g appendix removal?. Adhesions are sticky strands that tether organs together; no drug treatment will remove those once formed so surgery is often the only way forward.

What has the gynae advised you re future surgery?. This is all going to need careful management.

I would educate yourself further on endometriosis and a good place to start would be by looking at the Endometriosis UK website www.endometriosis-uk.org/. All this could help you with decision making on future treatment decisions. Also knowledge here is power.

Another website I would urge you to look at is the BSGE website as this has accredited endometriosis centres www.bsge.org.uk/centre/

I wish you all the best going forward.

@AttilaTheMeerkat thank you for replying. It was really quite overwhelming, the information they packed in, in a small amount of time. I've never had surgery before now. My Laparoscopy and cystectomy were my first and they said during the laporoscopy is where they found that my oragns were fused together. I have no idea what this actually means for my future and if I will need surgery again. Its never affected me in the past and they only found out because of having to go in to remove my cysts in the first place. I asked for a follow up and my gynae consultant said I wouldn't need one. I am to just go off and try and have babies if i really want them. Thank you for the resources they really do help. I have joined a fee online support groups too in case they can help me further.

god my head is such a mess, I dont want to have to have future ops. 😢

@soulfulsarah I realise this thread is white old so contacting you is a long shot, but I wondered how everything has gone for you?? I came across your thread in a similar position..Aged 34, wanting children and having just been diagnosed with an endometrioma on my right ovary, indicative of stage 3 or 5, endometriosis.

I don't really know what to think, but would love to hear from someone who's been through it?